Surgeons Launch Consortium to Care for Patients with Bladder Exstrophy

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Urology Update

Just a handful of pediatric urology centers across the country focus on the care of children born with bladder exstrophy. Building off a vision that Division of Urology team members had back in 2010, today a team of the country’s top pediatric urologists with specific interest and expertise in bladder exstrophy are seeking to reduce the variability in surgical care and improve outcomes for patients with this rare condition.

In 2010, team members from the Division of Urology at The Children's Hospital of Philadelphia had a vision to reduce the variability in surgical care of patients with a rare urologic condition known as bladder exstrophy. Our goal then and now is to provide these children with both excellent functional and cosmetic outcomes. Because bladder exstrophy is rare, occurring in only 1 per 50000 births, many surgeons will see only a few of these children in their career, making it difficult to develop the surgical expertise necessary to provide both urinary continence and an excellent genital appearance.

We felt it would be necessary to bring some of the most talented minds in pediatric urology together if we wanted to make a truly meaningful and impactful advancement in the care of babies born with bladder exstrophy. While many hospitals treat bladder exstrophy using a planned 3-stage surgical approach, Division Chief Douglas Canning, MD, and his team at CHOP — Aseem Shukla, MD, and Dana Weiss, MD — use a newer approach called the Complete Primary Repair of Exstrophy, repairing the defect completely in 1 stage. Recognizing that this is a technically difficult procedure, in 1997 we assembled a consistent and specialized Bladder Exstrophy Team for each surgical repair.

The team consists of 4 senior urologists, a dedicated orthopedic surgeon, and a pediatric anesthesiologist with specific interest in this anomaly and its correction, as well as specialized nurses who have trained and gained experience in this repair.

“It is our belief that a dedicated team at the bedside during the repair provides optimal results,” notes Canning. “For a national collaboration to be successful, we had to identify surgeons who also repair bladder exstrophy using this technique.”

Just a handful of centers across the country focus on the care of children born with bladder exstrophy. Our vision included putting together a team of the country’s top pediatric urologists with specific interest and expertise in bladder exstrophy. The goal of this multicenter team is to review surgical techniques, teach new physicians, and report on and improve patient outcomes. This surgical collaborative was formed over the last 18 months and includes surgeons from CHOP, the Children’s Hospital of Wisconsin, and Boston Children’s Hospital.

A surgical team from each hospital with a passionate interest in advancing exstrophy care travels from center to center to observe each bladder exstrophy surgery performed. One visiting surgeon videotapes the procedure while another observes and carefully records each step. The group collectively gives surgical guidance to the home hospital team.

“It’s a room filled with some of the best surgeons in the world, watching and advising the surgery for these boys and girls born with this very rare condition,” says Canning.

The program is in its infancy, but already in the past 16 months the team — which, along with the CHOP surgeons, includes Joseph Borer, MD, and Richard Yu, MD, from Boston, and Michael Mitchell, MD, Travis Groth, MD, and John Kryger, MD, from Wisconsin — has completed 20 exstrophy-related procedures, including 5 procedures at CHOP, thereby quadrupling the clinical experience each center would have had on its own. The goal is to standardize the surgical approach across each institution to rigorously study and report our outcomes as a national team, and ultimately make improvements based on these findings.

It will take 4 to 5 years to measure these outcomes, but a video of the procedure will be stored with each patient’s medical record and, based on the outcome, reviewed to identify potential areas for improvement. Canning hopes this program will grow into a national collaborative that includes other hospitals with pediatric urology programs with an interest in the care of children with bladder exstrophy and related conditions.

CHOP has a long heritage of leading advances in reconstructive urology and sharing its learnings with colleagues. This legacy began with the late John W. Duckett Jr, MD, a pioneer in pediatric reconstructive urologic surgery and former Director of Urology at CHOP. Dr. Duckett established the pediatric urology service and training program at Children’s Hospital in 1970, helped standardize major bladder reconstructive surgical approaches, and traveled the world to teach and to care for sick children.

“The collaboration of hospitals to identify and share information about best practices — especially regarding rare conditions seen only once or twice a year at an institution — is actually a much more effective way of improving quality,” says Canning. “Rather than each of us relying on our teams to come up with standards of care and ways to improve quality on our own, we work together. The synergy has been dramatic.”

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